Financial toll of caregiving — let's talk about it
Nobody talks about the money side of this so I'm going to. In the last 2 years of caring for my dad I have:
- Reduced my work hours (and income) by 40%
- Spent approximately $12,000 out of pocket on supplies, modifications to his living space, and copays
- Been denied for 2 different financial assistance programs because I make "too much" (LOL)
- Missed a promotion because I couldn't commit to the travel schedule
- Dipped into my retirement savings once
And I'm considered LUCKY because my dad has decent insurance and I haven't had to quit my job entirely. Some caregivers give up everything.
The system is broken. Caregivers save the healthcare system an estimated $470 billion per year in free labor and we get basically nothing in return. No tax breaks worth mentioning, minimal respite support, and means-tested programs that are impossible to qualify for if you have any income at all.
Sorry this is ranty. I just got another denial letter today and I needed to vent somewhere.
Lisa, vent away. This needs to be talked about. $12,000 out of pocket in 2 years — and that's WITH insurance. The system IS broken.
A few things I found researching this for you:
- Check if your state has a Paid Family Leave program (it's not just for new parents in some states)
- The National Family Caregiver Support Program through your local Area Agency on Aging may offer financial assistance
- FMLA can protect your job for up to 12 weeks if you haven't used it
- Some employers have caregiver-specific EAP benefits that they don't advertise well — worth asking HR
Also — I know someone who successfully appealed a financial assistance denial. Happy to help you look into that.
The $470 billion figure is real (AARP/NAC data) and it's probably an undercount. The financial devastation of caregiving disproportionately impacts women, who provide about 60% of informal caregiving, and it compounds over time through lost wages, reduced Social Security benefits, depleted savings, and career setbacks that never fully recover.
Lisa, a few more resources:
- The VA (if your dad served) has Aid and Attendance benefits that many families don't know about
- Tax deductions: if your dad qualifies as a dependent, you may be able to deduct medical expenses above 7.5% of AGI
- Medicaid waiver programs vary by state and some specifically cover home care
- Some pharmaceutical companies have patient assistance programs for medications
I know navigating bureaucracy while exhausted feels impossible. But there may be money on the table you don't know about.
Lisa, hearing those numbers makes me angry for you. and for everyone in this situation. the fact that you had to dip into retirement savings to take care of your own father because the system cant be bothered to support caregivers is outrageous.
for what its worth, your honesty about the financial side is really important. people dont talk about this enough because theres shame around money stuff. but how are you supposed to plan for retirement when you're spending your retirement on your parents care? the math doesnt math.